I just wanted to post an update for those of you involved in this thread so long ago. After over two years of chronic pain we finally got an accurate diagnosis last November. We found a pediatric GI doctor who did an endoscopy and colonoscopy and they found very large numbers of eosinophils, which are a type of white blood cell. She has been diagnosed with Eosinophilic Gastrointestinal Disease. This is a rare disease where her body treats food like a toxin/infection/parasite and sends white blood cells to the digestive tract and bloodstream. This causes severe pain, swelling, GI issues, vomiting, choking, etc. and can cause issues with infections, organs, etc.
She has been taken off wheat, dairy, soy, eggs, fish, shellfish, beans, peanuts and treenuts. More foods may be removed. She is on high doses of steroids and will undergo endoscopes quarterly until in "remission" (clean scope).
She had been in so much pain for so long and I am glad we are on track for finally fixing this!
16 Mar 2017, 9:41 am
